The link between alcohol consumption and cancer is well established, but public awareness of the risk remains low. Mandated warning labels have been suggested as a way of ensuring “informed choice” about alcohol consumption. In this article we explore various ethical issues that may arise in connection with cancer warning labels on alcoholic beverages; in particular we highlight the potentially questionable autonomy of alcohol consumption decisions and consider the implications if the autonomy of drinking behavior is substantially compromised. Our discussion (...) demonstrates the need for the various ethical issues to be considered and addressed in any decision to mandate cancer warning labels. (shrink)

Background Outbreaks of infectious disease cause serious and costly health and social problems. Two new technologies – pathogen whole genome sequencing and Big Data analytics – promise to improve our capacity to detect and control outbreaks earlier, saving lives and resources. However, routinely using these technologies to capture more detailed and specific personal information could be perceived as intrusive and a threat to privacy. Method Four community juries were convened in two demographically different Sydney municipalities and two regional cities in (...) New South Wales, Australia to elicit the views of well-informed community members on the acceptability and legitimacy of: making pathogen WGS and linked administrative data available for public health researchusing this information in concert with data linkage and machine learning to enhance communicable disease surveillance systems Fifty participants of diverse backgrounds, mixed genders and ages were recruited by random-digit-dialling and topic-blinded social-media advertising. Each jury was presented with balanced factual evidence supporting different expert perspectives on the potential benefits and costs of technologically enhanced public health research and communicable disease surveillance and given the opportunity to question experts. Results Almost all jurors supported data linkage and WGS on routinely collected patient isolates for the purposes of public health research, provided standard de-identification practices were applied. However, allowing this information to be operationalised as a syndromic surveillance system was highly contentious with three juries voting in favour, and one against by narrow margins. For those in favour, support depended on several conditions related to system oversight and security being met. Those against were concerned about loss of privacy and did not trust Australian governments to run secure and effective systems. Conclusions Participants across all four events strongly supported the introduction of data linkage and pathogenomics to public health research under current research governance structures. Combining pathogen WGS with event-based data surveillance systems, however, is likely to be controversial because of a lack of public trust, even when the potential public health benefits are clear. Any suggestion of private sector involvement or commercialisation of WGS or surveillance data was unanimously rejected. (shrink)

Should there be a female age limit on public funding for assisted reproductive technology (ART)? The question bears significant economic and sociopolitical implications and has been contentious in many countries. We conceptualise the question as one of justice in resource allocation, using three much-debated substantive principles of justice—the capacity to benefit, personal responsibility, and need—to structure and then explore a complex of arguments. Capacity-to-benefit arguments are not decisive: There are no clear cost-effectiveness grounds to restrict funding to those older women (...) who still bear some capacity to benefit from ART. Personal responsibility arguments are challenged by structural determinants of delayed motherhood. Nor are need arguments decisive: They can speak either for or against a female age limit, depending on the conception of need used. We demonstrate how these principles can differ not only in content but also in the relative importance they are accorded by governments. Wide variation in ART public funding policy might be better understood in this light. We conclude with some inter-country comparison. New Zealand and Swedish policies are uncommonly transparent and thus demonstrate particularly well how the arguments we explore have been put into practice. (shrink)

Certain restrictions on public funding for assisted reproductive technology (ART) are articulated and defended by recourse to a distinction between medical infertility and social infertility. We propose that underlying the prioritization of medical infertility is a vision of medicine whose proper role is to restore but not to improve upon nature. We go on to mark moral responses that speak of investments many continue to make in nature as properly an object of reverence and gratitude and therein (sometimes) a source (...) of moral guidance. We draw on the work of Ludwig Wittgenstein in arguing for the plausibility of an appeal to nature in opposition to the charge that it must contain a logical fallacy. We also invite consideration of the moral plausibility of some appeal to nature. Finally, we examine what follows in the case of ART. Should medicine respect as natural limits that should not be overcome: the need for a man and a woman in reproduction; menopause; and even declining fertility with age? We must first ask ourselves to what degree we should defer to nature in the conduct of medicine, at least in the particular if not the general case. This will involve also asking ourselves what we think is natural and in what instances and spirit might we defy nature. Divergent opinions and policies concerning who should receive ART treatment and public funding are more easily understood in view of the centrality, complexity and fundamental nature of these questions. (shrink)

Department of Medical Education, Flinders University of South Australia, GPO Box 2100, Adelaide SA 5001. Tel. : +61-8-7225-1111; Fax: +61-8-8204-5675; Email: lee0359{at}flinders.edu.au ' + u + '@ ' + d + ' '/ /- ->.This paper analyses the role of communication strategies in pandemic influenza planning. Our central concern is with the extent to which nations are using communication to address issues of social justice. Issues associated with disadvantage and vulnerability to infection in the event of an influenza pandemic raise (...) distinct questions about how well less well off groups will be protected. The potential for a public health emergency of this type to exacerbate existing inequalities, making those in less well off positions worse off, makes social justice an important consideration for pandemic planners. National PI plans offer insights into the ways that nations may use communication to address issues of disadvantage, thereby providing a way of examining how communication strategies are presented and their potential to mitigate inequities. Our research reviewed 12 national PI plans and assessed the extent to which nations are using communication to assist and limit possible harms to less well off groups. We outline in this paper some important issues and considerations associated with social justice and flu planning, in particular if and how plans are addressing inequalities. CiteULike Connotea Del.icio.us What's this? (shrink)

Introduction No consent for health and medical research is appropriate when the criteria for a waiver of consent are met, yet some ethics committees and data custodians still require informed consent. Methods A single-blind parallel-group randomised controlled trial: 1129 families of children born at a South Australian hospital were sent information explaining data linkage of childhood immunisation and hospital records for vaccine safety surveillance with 4 weeks to opt in or opt out by reply form, telephone or email. A subsequent (...) telephone interview gauged the intent of 1026 parents (91%) in relation to their actions and the sociodemographic differences between participants and non-participants in each arm. Results The participation rate was 21% (n=120/564) in the opt-in arm and 96% (n=540/565) in the opt-out arm (χ2 (1 df) = 567.7, p<0.001). Participants in the opt-in arm were more likely than non-participants to be older, married/de facto, university educated and of higher socioeconomic status. Participants in the opt-out arm were similar to non-participants, except men were more likely to opt out. Substantial proportions did not receive, understand or properly consider study invitations, and opting in or opting out behaviour was often at odds with parents' stated underlying intentions. Conclusions The opt-in approach resulted in low participation and a biased sample that would render any subsequent data linkage unfeasible, while the opt-out approach achieved high participation and a representative sample. The waiver of consent afforded under current privacy regulations for data linkage studies meeting all appropriate criteria should be granted by ethics committees, and supported by data custodians. Trial registration number Australian New Zealand Clinical Trials Registry ACTRN12610000332022. (shrink)

BackgroundThere is a growing concern about artificial intelligence (AI) applications in healthcare that can disadvantage already under-represented and marginalised groups (eg, based on gender or race).ObjectivesOur objectives are to canvas the range of strategies stakeholders endorse in attempting to mitigate algorithmic bias, and to consider the ethical question of responsibility for algorithmic bias.MethodologyThe study involves in-depth, semistructured interviews with healthcare workers, screening programme managers, consumer health representatives, regulators, data scientists and developers.ResultsFindings reveal considerable divergent views on three key issues. First, (...) views on whether bias is a problem in healthcare AI varied, with most participants agreeing bias is a problem (which we call the bias-critical view), a small number believing the opposite (the bias-denial view), and some arguing that the benefits of AI outweigh any harms or wrongs arising from the bias problem (the bias-apologist view). Second, there was a disagreement on the strategies to mitigate bias, and who is responsible for such strategies. Finally, there were divergent views on whether to include or exclude sociocultural identifiers (eg, race, ethnicity or gender-diverse identities) in the development of AI as a way to mitigate bias.Conclusion/significanceBased on the views of participants, we set out responses that stakeholders might pursue, including greater interdisciplinary collaboration, tailored stakeholder engagement activities, empirical studies to understand algorithmic bias and strategies to modify dominant approaches in AI development such as the use of participatory methods, and increased diversity and inclusion in research teams and research participant recruitment and selection. (shrink)

Precision medicine is an emerging approach to treatment and disease prevention that relies on linkages between very large datasets of health information that is shared amongst researchers and health professionals. While studies suggest broad support for sharing precision medicine data with researchers at publicly funded institutions, there is reluctance to share health information with private industry for research and development. As the private sector is likely to play an important role in generating public benefits from precision medicine initiatives, it is (...) important to understand what the concerns are and how they might be mitigated. This study reports outcomes of a deliberative method of citizen engagement in Singapore that asked whether sharing precision medicine data with private industry would be permissible, and if so, under what circumstances. Findings from this citizens’ jury suggest sharing with industry would be permissible under certain conditions that are set out in nine recommendations. Implications of the recommendations and their underlying assumptions for policy decision makers are discussed. This study aligns with prior international studies which found conditional acceptance for data sharing with private industry, a public benefit requirement, specific reluctance to share with insurance companies and an emphasis on accountability and transparency to demonstrate trustworthiness. However, our results differ from prior studies in that opt-in consent did not dominate the deliberations as jurors were able to set it aside as an assumed prerequisite for participation in a precision medicine programme. (shrink)

Across the world, pain is under-treated in emergency departments. We canvass the literature testifying to this problem, the reasons why this problem is so important, and then some of the main hypotheses that have been advanced in explanation of the problem. We then argue for the plausibility of two new hypotheses: pain's under-treatment in the ED is due partly to an epistemic preference for signs over symptoms on the part of some practitioners, and some ED practices that themselves worsen pain (...) by increasing patients' anxiety and fear. Our argument includes the following logic. Some ED practitioners depart from formal guidance in basing their acute pain assessments on observable features rather than on patient reports of pain. This is potentially due to an epistemic preference for signs over symptoms which aims to circumvent intentional and/or unintentional misrepresentation on the part of patients. However, conducting pain assessments in line with this epistemic preference contributes to the under-treatment of pain in at least three respects, which we detail. Moreover, it may do little to help the practitioner circumvent any intentional misrepresentation on the part of the patient, as we explain. Second, we examine at least four ED practices that may be contributing to the under-treatment of pain by increasing patient anxiety and fear, which can worsen pain. These practices include failing to provide orienting information and partially objectifying patients so as to problem-solve along lines pre-established by modern medical science. We conclude by touching on some potential solutions for ED practice. (shrink)